Monday, May 27, 2013

" You can't be responsible " & Talking out of both sides of the mouth...

        I have been thinking about something of late that has really been a source of lifelong angst. Although Agenesis of the Corpus Callosum manifests more or less as a spectrum disorder, there are so many commonalities amongst both high and low functioning individuals, sometimes not even having to do with us, but with our upbringing.

      With my ACC, I'm sure that my parents observed wild inconsistencies in my behavior, my affect, my "performance," etc...leading to many false conclusions on their part...this much seems to be common in many of us who never had our ACC diagnosed until adulthood, and even some who have.

        It was not until my later years, (I'm now 51 years old, this July) that I began to comprehend and have the ability to describe accurately my sense of self/internal state to others.  To be fair, I do not blame my parents for anything, after all, we can only function within the parameters of information/knowledge and skills we are given.  Having said this, my parents (like the parents of many) talked out of "both sides of their mouths."  

        It looks like this "Scott (my first given name, i.e., 'Scott Joseph Galbraith') you can do anything you put your mind to," while out of the other side of their mouths was " you will never amount to anything, you are not responsible," etc...I can never shake the memory of being 14 years old and asking my mother if I can take out the garbage for her.  Her answer was "no, you cannot be responsible."  Now I carried a lot of rage for many years, but I've begun to embrace and comprehend in my later years this isn't so.  This was not because I "cannot be responsible."
Personal responsibility is something I more or less, given up on.  For most of my life I'd rejected  any effort or even desire to be "personally responsible" for my life because it was verbally beaten and drummed into me that I was "broken", "useless", etc..words my father and mother were wont to use quite often.  They did not have the benefit of understanding I had ACC, and what the profound implications were, and so I've forgiven them this many years now.  Just imagine if you saw someone (myself) saying one thing and doing another (common in ACC) or the Rapid State Change that is very very common with this disability.  Rapid State Change does not denote a "mood disorder", or rather it is not proper to focus only on mood when describing it.

        Those born without a Corpus Callosum lack higher abilities in modulation of all sort of things that come second nature to most humans once it (the Corpus Callosum, hereafter "CC") begins to mature and function better, around the age of 13 or so.  We have difficulty modulating things like sleep vs wakefulness, attention vs distraction, emotions, fantasy vs reality, hand pressure (specifically noted in the handwriting of many ACC.)

        I particularly remember a writing assignment in school, and my handwriting, on this particular day, not only could I not keep within the lines, but was taking up an entire page, sometime even for one word, or "dripping" down the sides of the page...

        Those without a CC often have a subset of neurological difficulties, such as auditory processing errors (which I have), speech processing errors, (when I intend on saying one thing, I may actually say the opposite of what I mean, and not even comprehend that I have done so.  Add to this the rapid state change, and it looks pretty insane from the outside (believe me, insane from the inside too, many of us adults with ACC questioned our own sanity before we were diagnosed.)  

        I would have states of echolalia (repeated heard phrases when trying to communicate) and "selective mutism" (the inability to speak or communicate with the outside world), yet my parents had absolutely no clue what was happening.  Doctors would check my hearing and say "he hears fine" etc...but they were not looking at brain function.

        To give you an example of this...during my last several neuropsych evals, the doctors put stereo headphones on my head.  In one ear, they would speak a verb, in the other a noun (at the same time.)  Neuro-typical folk (most of you reading this ;)  ) would be able to hear and process both at the same time, I cannot.  My brain would typically want to hear only through the right ear (again remember I have "perfect hearing") and, particularly the more stress or difficulty of words, this testing could send me into a profound fugue state (TGA, or temporary global amnesia), I would not know how to speak, who I was, where I was, lasting from anywhere from 20 minutes to many hours.

        Put yourself in my shoes, and try to comprehend how terrifying this is for me, especially before I understood what was happening...and now look at it from my parents point of view.  These kind and wonderful people, who did their best to help me, were ignorant of the facts of my disability, they "saw" a recalcitrant, obstinate, "psychopathic liar" (my father's kind words)... a weak, lazy kid...

        For many years I bought this bag of bullshit, hook line and sinker, but that all changed when I received a brain scan in order to look for the source of neuralgia I experienced prior to going on chemo for Hepatitis C, and stage 1 Liver Cancer (and thank God I am cured today!)

        Even long before my diagnoses of ACC, my life began to change in the months prior to 9/11.  I had realized the worst fear of my life, and
became homeless for a short time (3 weeks) on the streets of San Francisco.  I remember there was no beds to sleep  on in the shelter, only chairs at a table where we could rest our heads (OMG I feel like Jesus, there was "no room in the inn: LOL.)  I remember cursing God inside I was shouting at God "look what you did to me, why are you doing this to me" etc....and from deep within rose up a Voice which explained to me "I did none of this, this is all your doing, you build up and tear down and build up again." 

        God was not "blaming" me either...but what I realized that morning, was that not only did I have the power to screw things up, but had the unique ability to "put out the fires I started."  So for me this was not about guilt and shame, but personal responsibility.  This phrase too, was very important to me.

        I have a Mensa IQ, but not really ever had the ability to make use of it in normal living.  Without my CC, I have a near encyclopedic long term memory of facts, languages, images, but I lack the integrative and processing powers to utilize them.  Like many without a CC, I do not possess "working memory" which makes this possible.  Until this time in my life I had "couch hopped" and "city hopped" living in many different countries and cities and places for no longer than a few months at a time.

        In my "travels" I got to meet and work with Carol Erickson, daughter of the late psychiatrist and father of medical hypnotherapy Milton Erickson.  As I sat in her office, in typical Ericksonian Dialogue style she began to tell me, or rather weave for me, a myth about "the tomato farmer."  How he cultivated the soil, tilled the rows, carefully planted his tomatoes, weeded them, watered them, and how proud he was when they began to produce fruit...and he understood the question of personal responsibility."  We were also told that we would likely quickly forget this story, that it was not of any use to me at this time but would come at the perfect time and I would understand it.  (In fact, I never even remembered any of this session once I walked out of her office that day.)

        It would be many years later, in that homeless shelter off of Market in San Francisco, that I would remember the entire session, and for weeks afterwards, anytime I became silent or still, I heard the words "the question of personal responsibility."  in my mind.  My life began to blossom that day...mind you my life was not "rosey" not by any stretch of the imagination, but things began to rapidly change.

        Two friends from years past saw me on the streets, and offered me help, but with an ultimatum, I was to be given all the help I needed for a period of time, and after that I was on my own, but during that time they would do everything to help me.  One was an attorney, so he began helping me plug into "the system."  Within a month I had a job (which didn't really last long, with ACC I'd never been able to keep a "neuro-typical job" ever....nonetheless it was the longest I'd ever kept a "regular" job...and I began to experience great joy from the feeling of personal responsibility.

        Until this time in my life, I had actually grown to hate personal responsibility, I felt that I needed (exclusive) support from the "outside" to survive.

        My own father, he meant this as an insult and slur, and it caused me pain for years, until that time in the shelter, well, he said, "I could charm the balls off of a brass monkey," meaning that I was using my wit, will, and charm to "dupe" people...he was wrong, and right at the same time.  ACC folk, like those with ASD (Autism Spectrum Disorder) when they function as I (socially/emotionally) on a rather low level, learn to become chameleons.  We can parrot social/emotional behavior, but not understand it, we can blend into almost any social situation for a time, and charm others or quickly gain rapport with them, and manipulate the environment to get our needs met.  Like many, I felt that was my only hope to survive in this "cruel world."

   Flash to today, and I know who and what I am (as an ego/personality/person) and understand the joy of personal responsibility.  I have also come to understand the self imposed shame and guilt I had because I innately knew, as I still acknowledge today, that I would always need the help of others to function "normally" in the neuro-typical world...but no longer do I carry shame for this, but I rejoice in this awesome creation of the Creator, who is perfect in every way.  As I said in Scientific American Mind magazine last January, when I was diagnosed with my missing CC, my parental and self imposed shame and guilt began to melt like an iceberg in the sun.

        Today I'm in the process of forming a Non-Profit to benefit those with ACC, providing resources, and adaptive technologies to help.  I've already gotten to support a large handful of parents with ACC children and ACC adults.  Where I cannot go back and change the lives of myself and my estranged family, I am a blessing to those in need with ACC.  Personal responsibility has made this so.  I am indebted to Gur and Guru (God and the Godman) for making this so.

       While there is an entire other story to my life, the story of my spiritual quest to the Heart of the matter, and Heart of the Master, I'll leave that for my other blog, soon to come, "At Guru's Feet."  I will let you know when this is fully active.  I have no more fear at sharing the "real me", the "whole me", but find I do better when I can somewhat "compartmentalize" my communications, not for my benefit, but that of others.

        Finally, I want to thank everyone who has made this possible, my biological family, and my Chosen Family, the Satnaam Parivar, the Family of Truth, those that love us for who they know we really are, and see past the illusion of self-other.  For the many sisters, brothers, mothers, and fathers in my life, those that have, and continue to show me unconditional love and respect and trust...and to Satnaam Parbrahm Parmesur Satguru Ji, The Only One Who Is...may I be charan dhool (the dust of the feet of all.)

Satnaam, Satnaam Satnaam Ji,

The one they call:
~gurudasa satnaam ji

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